Dementia Journal, January 13, 2019 in Daydreaming on the Porch

9:30 pm

Lately I’m starting to feel as if I’m on the final leg of this long descent into night of Mom’s struggle with dementia. Her vitals and blood sugar levels continue to be good for the most part, but she seems to be fading. But even with her mental capacity so diminished, she has a lot of self-awareness. She is frequently focused on the fact that she thinks she is dying, right now, anytime. She’ll say to me not long after I’ve gotten her up in the morning, in a very somber tone of inevitability, “I’m dying!” She’s said this so often that I’m beginning to worry about the “boy who cried wolf” syndrome. Imagine what it’s like to hear this from a loved one so often! I really feel numb sometimes.

She sleeps most of every day and 12 hours at night. The main times she is awake are at night after the caregiver has left. That’s when she’ll start talking and asking questions incessantly, repeating them over and over. She’s afflicted with terrible dry skin and itching, and I’ve tried all the major anti-itch creams, seemingly to little avail. It drives her and me crazy so I’m going to talk to the doctor about it. It will be an ordeal but my brother and I will have to take her to the doctor later this week anyway because she has this strange, cyst-like growth on her wrist that won’t go away.

She spends a lot of time reading her Bible verses or praying. I’ll be sitting next to her on the sofa fiddling with my phone and trying to read an article or two out of the hundreds saved on my Pocket app. Mostly it’s an effort of will to concentrate. Sometimes I rather futilely bemoan the loss of my nights these many years now. I really can’t do anything I want to because I have to sit here with Mom. Night after night, month after month and year after year, since 2010.

Don’t get me wrong. As you who’ve been reading this journal know, I’ve accepted this responsibility and I dearly love my mother and will do anything in the world for her. But I’ve sacrificed so much of my life for caregiving the past ten years that I’ve forgotten what it’s like to be free, free in the sense of being able to do what you want, when you want. That’s lost to me. I know where I’ll be and what I will be doing every night of the week.

Here’s something that I want to impart to anyone caring for a loved one with Alzheimer’s or another type of advanced dementia. When Mom is in a good mood and feeling ok, I’m okay, too. I feel I can cope, life’s routines go on, and there’s a sense of normalcy in our little world. For several days in a row recently Mom has been so sweet, so loving and even thoughtful of others, despite her dementia. She says the kindest and most delightful things to me and the caregivers who work for us. Many of the things she says are quite humorous and tender as well. All is sweetness and light. I’m relaxed, and more confident that I can handle the uncertainties of this unending, unnerving progressive disease of the mind.

But there’s also something I try to avoid as it gets late each evening, and that’s beginning the sometimes arduous and unpredictable “getting-Mom-to-bed” routine. Often it goes smoothly, but sometimes, as happened two nights ago, it all goes downhill on the turn of a dime. It often begins when I attempt to lift her by myself from the sofa to the waiting transport chair. She’s rather heavy actually for 95 (145 pounds), very sensitive to pain, her skin is paper thin and the slightest wrong move on my part will set her off. She’ll tell me I’m hurting her while she’s also asking who I am and looking very strangely at me with this wild and bewildered look in her eyes. I mostly manage to get her teeth brushed and successfully get her on the portable commode, wiped, cleaned, and in her nightgown and then tucked in bed.

Then it will start. She’ll call out for her mother and father or ask where my dad is. All of a sudden out of nowhere, she turns into this other, totally unrecognizable person — angry, paranoid and saying absolutely horrendous and awful things to me and about me. I don’t even want to recount any of them now, they’re so unbelievable and awful. I’ve gotten somewhat used to it, but it reached a new level of awfulness the other night. You would never imagine this was the same sweet person of an hour ago telling me she loved me and putting my hand next to her cheek. She wouldn’t go to sleep so I had to sit in the room and tell her over and over again who I was and that I would be with her all night and that she would be okay. Repeat, repeat, repeat. Finally after about a half hour she fell asleep and I tiptoed out of the room breathing a sigh of relief. I headed immediately for the porch, felt the brisk cold winter air, and looked up into the night sky. Ah, peace at last.

8 am, Jan. 15, 2019

It didn’t last long. For the past two nights at 2:30 am, and in what is unfortunately becoming a pattern, I heard Mom on the monitor:

“Mama, Daddy!”

Maybe it will stop, as it sometimes does. I hear some mumbling and rustling. I had just gotten comfortable each night, starting to read, watch YouTubes or a movie, listen to music or write, when after about ten minutes of this, I make the trek downstairs to check on her and reassure her, trying to get her to go back to sleep.

What happens is that I think she wakes up confused and frightened because she feels alone and she’s very afraid of that.

When I come into the room, she doesn’t know who I am at first.

“Where am I?”

I’ll tell her.

Then a minute later, “Where am I?”

“Who are you?” She’ll ask me.

“Guess.”

“You’re P___.” (One of our caregivers)

“No, Mom, I’m your son.”

“What’s your name?”

When I tell her she seems to recognize me.

But she quickly forgets all this, and it’s back to “Where am I?”

And to think earlier in the evening she’d had lucid spells. She asked me, “Have you eaten? I’ll fix you some supper. I love you.”

Last updated January 16, 2019